A powerful voice…

Source: A powerful voice…

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why me?!

this is probably the first question we have all asked. its the 1st thing that comes to mind when one is diagnosed with a chronic illness. and then another, and sometimes another. why?

This came up in part @ Healthevoices17 , in the form of Why do i advocate? In short i advocate because i was lucky enough to have a life changing illness. yep we all agree on that. but we didnt chose the illness it chose us. i guess being the chosen ones we are strong enough to not only fight the disease but get up everyday and advocate for it. without us many people simply wouldnt have the information they do now. they would be buying snake oils, and herbs, going on special diets, all while pouring thier earnings into a huge hole in the internet that gives way to these people.

i am proud for what i do and for the special family of advocates that i have become part of.

i maybe in pain today or tomorrow but i dont let that stop me from writing, doing videos, replying on twitter, or sharing my feelings in person.

 

 

disclaimer :  Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

Ive gone crazy….

Its been a couple weeks since HealtheVoices17. A few of us met up a day early and walked around Chicago, as its got to be the most beautiful city I have ever been in, and this was my 3rd time there number 4 is coming up in August, and i cant wait!.

We had lunch at the infamous http://www.billygoattavern.com/ yes we all had double Cheezborger, Cheezborger, Cheezborger.

For dinner we asked the locals who all pointed us to https://www.loumalnatis.com/

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i must say thank you, i loved this pie, sausage, cheese, tomato on a buttercrust, OMG!.

At the event we solidified our personal group “IknowPsO” had some teachings from Chicago Storylands own Scott Whitehair. Awesome class, made us think quite a bit. We are all storytellers and i think this class helped us grow in that respect.

The next couple days were extremely emotional, many hugs were given, more friendships were born and others matured. Its such an empowering event everyone spilling their hearts shedding their tears as to why we advocate. Everyone has a story to tell even the people who put the event together. They may not advocate, but EVERYONE has a story to tell. Everyone has someone in their family who has been stricken by a illness, many incurable, and thats why we advocate.

Personally when i was diagnosed with Psoriasis i was devastated. Why me? Well Healthevoices has told me why this disease chose me. Im big enough to stand up to it, and speak out against it so others wont feel so lonely and afraid as i did back in 2007. I didn’t chose to be an advocate it chose me. Psoriasis has tested my limits, with not sleeping for days on end and then when the Psoriatic Arthritis came into play the fatigue and pain that kept me in bed for so long.

Life has handed me many curveballs, and i keep on, keeping on. I promise not to give up.

 

 

disclaimer :  Janssen Global Services paid for my travel expenses for the conference. All thoughts and opinions expressed here are my own.

OMG!

Its saturday already, tomorrow is easter so im going to see my grandson, that means driving for 4 hours. ouch. by the time i get there  i will be stiff as hell my hands, legs ankles , well you got the idea, im an arthritic guy. usually i need a day or so to recover but ill be back to work monday and tuesday then its off to Chicago! OMG! i cant wait for HealtheVoices17!! this is a truly awesome event, i had a great time last year and plan to have a better time this year. 🙂  i plan on learning a ton of stuff, and i want to get some more ideas. Are you going? do you know what this is?

Happy Saturday!

Lately i find myself relaxing and doing almost entirely nothing on Saturday, its quite fulfilling. You see, i work all week and im quite frazzled by the end of the week, Saturday morning il get up at 530-630, i normally get up at 530 anyway. ill watch some YouTube and catch up on my fav you-tubers , maybe ill putter around the kitchen put away clean dishes and stuff, have breakfast and now (about 10am)  ill sit on the couch, start to watch some educational videos, ill then wake up like 1 o’clock, shower make lunch and yes again sit on the couch. What a great way to recharge, collect my thoughts, come up with thoughts and ideas. On Sunday i put everything into motion again, get up vacuum, wash laundry, mop the floors clean, well you get the idea.

Most of the time this works for me, there are some days that i get up and dont feel like doing anything, thats the sad part about my disease you never know when the fatigue will knock you down.

beauty

i just read a post on facebook about a woman who is very beautiful, and yet when she looks in the mirror she thinks my teeth should be whiter or or or.

this reminded me that when i was a pre-teen i tried to copy what my friend Tom was drawing. He drew dragons. I LOVED it. i tried to copy it, he looked and said thats really good, i said no, looks nothing like yours, and i tore it up. this happened many times. finally i gave up. in my teens my buddy was painting scenes from a Yes album onto jeans and jackets, i would look at the album, look at the jacket and say move this line to here, i was right. he said you draw? i said no. in my 20s (24-27) in that era, i was bored one day and i was copying Darkwing Duck. My wife , at the time, walked in said what are you doing? I said drawing DW Duck. She said “trying to draw?” this irked me. i was so mad it took 4 hours but i did it, all those years i thought i could not draw, when in fact it was me holding me back, i was too critical too perfect. What i learned was that If you step back for a moment you an look past the little things, the minor flaws, and see the real beauty within.

I made it!!!!

So after he could breakfast some training at a nice healthy lunch we went to Capitol Hill to bang on some doors unfortunately because of the weather not many people were available actually we found none we did however drop off some packets and some handwritten notes asking for representatives to take a look and support our request asking for some money for the CDC.


After couple hours of that we decided it was time to take a little break so we went to the Smithsonian and checked out some aircraft.

Afterwards we settled down an had a good dinner. Next it’s bedtime as we have an even earlier start tomorrow. 

Alexandria, VA

So I got here to the hotel at about 540 last night. Since I had been travelling since noon  u I decided to eat in. Yep room service gotta love it. What do you get here? That’s right baby Chesapeake Bay crabcakes. Yum!

They even gave me an extra unsweetened tea free, good thing because 4 dollars for that little glass is highway robbery! Lol!

 It started to flurry a little the stopped. Now at 6am it looks like maybe 3 inches? But it sounds like sleet or hail out there.

I was told last night they’re expecting maybe 6 inches but they aren’t prepared for it. We shall see. Hopefully little to no travel today.

Capitol Hill

Next week i am travelling to Capitol Hill with the National Psoriasis Foundation to speak with congress about Psoriatic diseases. The NPF sent this:

“Each year, the National Psoriasis Foundation (NPF) brings a select delegation of psoriasis patient advocates, research scientists and medical professionals to Capitol Hill to meet with Members of Congress and their staff to advocate for greater federal attention for psoriatic disease research and programs. This unique mix of researchers speaking about promising areas of psoriasis research and future opportunities, alongside patients sharing about why psoriasis is so important to them personally is very powerful.”

Each of us has a story to tell. We are all different come from different states, towns etc, however we pretty much have the same story. I was happy and healthy and WHAM-O! Psoriasis/Psoriatic Arthritis ripped the rug out from under my feet. I went from 100%- 10% in no time. Dont get me wrong there are many days i feel fine, but then there are days i want to crawl under the blankets and i dont want to talk to anyone, because even talking would be too much effort.

I am relaxing now to hopefully be ready and give this my all, as the more people that hear my story and others like mine the more efforts there will be into finding a cure for this horrible disease. I dont know right now how many pictures ill be able to take or whatever but i do hope to post a few so you all can follow along on my trip to DC.

Questions? Comments? Please feel free!

S.H.I.T…

Yep! So Happy Its Thursday!!

the week is almost over i got to get rid of some more cardboard (tomorrow is recycle pickup day) Ever since i moved ive been ordering things left and right since i had nothing. I had to buy couch, table chairs, TV, TV stand, computer desk ( i got a small mobile cart figured that was better than a huge desk with no room to put it…), lamps. So yes everything comes in boxes via amazon or ikea. The box from the couch is still here its too large to put out im sure it will sail away, LOL. Just waiting for a better night to toss that its against the wall you dont even know its there. The last piece is coming tomorrow its the tv stand. after that its just normal everyday living. i am hoping to finish straightening out this place before the end of the month, have everything unpacked etc. I am only working on it on Sundays so it is taking a little time, but i really dont want to rush either.

How was your week?